I was diagnosed in November 08 so all new to me. I have been reading through everyone else's threads and there seems to be lot's suffering far far worse than me. Does everyone get this bad eventually? How long have you all had Crohn's. I am finding it so hard to come to terms with as I am and the thought of getting much worse is scarring the life out of me!
How long ....
- Thread starter AmyD
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I've had it for over 20 years.
Don't get stressed about it, we all have very different symptoms.
Even when things get bad, it usually happens so gradually, you won't realise, just how sick you are untill your better...!!! It's a cruel joke by the disease.
I've actually found that it gets easier to deal with, the longer you have it.
It becomes a way of life.
Also, the meds nowadays are fantastic, compared to years ago.
I'm a wuss, so if I can survive, you will too... enjoy the forum, it's actually quite fun as well as informative.
As we say here in Ireland... It's great Craic.
Don't get stressed about it, we all have very different symptoms.
Even when things get bad, it usually happens so gradually, you won't realise, just how sick you are untill your better...!!! It's a cruel joke by the disease.
I've actually found that it gets easier to deal with, the longer you have it.
It becomes a way of life.
Also, the meds nowadays are fantastic, compared to years ago.
I'm a wuss, so if I can survive, you will too... enjoy the forum, it's actually quite fun as well as informative.
As we say here in Ireland... It's great Craic.
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Hi Amy. I am here to put your mind at ease. I too read these posts and think about how much worse others have it than I do...I am just thankful that it's never been as bad as I know it could be and try not to worry about what may never happen.
I was diagnosed seven years ago when I had D...10-20 trips per day and all through the night. Since I got that initial flare under control, my flares are far less severe. The main problem I have is with fistulas, which are not pleasant, but are tolerable. But the one thing I wanted to let you know is that I have NEVER been hospitalized because of my CD. I have had one minor outpatient surgery for a fistula, but that's it...so I consider myself lucky. Like Pen said, try not to stress about it. It's true that none of us knows what the future has in store, so just work on keeping yourself as healthy as possible in the here and now.
Welcome to the forum and Good Luck!
I was diagnosed seven years ago when I had D...10-20 trips per day and all through the night. Since I got that initial flare under control, my flares are far less severe. The main problem I have is with fistulas, which are not pleasant, but are tolerable. But the one thing I wanted to let you know is that I have NEVER been hospitalized because of my CD. I have had one minor outpatient surgery for a fistula, but that's it...so I consider myself lucky. Like Pen said, try not to stress about it. It's true that none of us knows what the future has in store, so just work on keeping yourself as healthy as possible in the here and now.
Welcome to the forum and Good Luck!
fenway1971
Sports Crohnie
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Amy -
I echo everyone's comments. I'm 37 (feel like an old goat in this forum sometimes) was diagnosed when I was 32. Lived my life with watery poo but never more than 3-4x per day. Had my worst flare last summer and am on the mend (currently no symptoms but am trying to taper off steroids and get on maintenance therapy).
Use this forum to vent, ask questions, cry, laugh and share embarassing stories. We all do. It's therapeutic.
I echo everyone's comments. I'm 37 (feel like an old goat in this forum sometimes) was diagnosed when I was 32. Lived my life with watery poo but never more than 3-4x per day. Had my worst flare last summer and am on the mend (currently no symptoms but am trying to taper off steroids and get on maintenance therapy).
Use this forum to vent, ask questions, cry, laugh and share embarassing stories. We all do. It's therapeutic.
29 years old and 19 years of Crohns, and like Jed said it isn't a competition everyones experiences with Crohns is different. I find myself in awe of what other people have gone through, but just because it happens to some doesn't mean that it will happen to all.
AmyD said:
funny you make this thread... i'm new to this as well (went to emergency in mid december 08, then officially diagnosed in jan 09)... i'm 29 years old. they suspect i've had Crohn's for about 4 years..at least.
and i'm having a rough day today. i feel overwhelmed with all of the appointments i've had to go to, trying to find ways to fit it in to my work week... today i took the day off to see the eye specialist.
i keep hearing from doctors and specialists that these symptoms i am getting are apart of Crohn's and although they've been treated, they will return.
e.g. on my way out of the eye specialist's office he confidently says 'nice meeting you. i will see you again, because this will happen again...' funny thing is, he told me his wife has Crohn;s.... then at the hospital the lady who first checked my eyes said 'my brother has Crohn's... this is something that you'll have to deal with again'.
i hate that now when i FINALLY got on track financially (only thanks to a kind relative who left me a large amount of money in her will)... and i want to travel, i can't find anyone to travel with and i find myself feeling like time is running out... if i don't go now while i feel like my symptoms are tolerable (to some degree)... later on, it'll only get worse and i won't be able to travel as much.
it just freaks me out knowing that this will only get worse and not better (i know that it is inevitable that i'll require surgery at some point as it seems most crohnies do...and my GI has already mentioned this possibility to me if my next appt doesn't show any improvement). i try to think positive most of the time... but i'm having a hard time adjusting and i keep being told things i don't want to hear by health professionals.
it's still sinking in... i can't believe this. i keep thinking to myself, wish i found out earlier... what REALLY pisses me off is, i was being treated for the joint pain for a few years...taking prescription antiinflammatory meds (including over the counter medication like aspirin) and now it turns out the joint pain was due to crohn's and those medications only caused more damage. i'm so angry about this.
sorry i went off on a vent there.... but i feel you. i can relate to the worry this brings.
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cheeky said:
i'm pretty much resigned to the fact that i'll need to be bagged one day as well, and possibly other surgeries. ah well. if thats going to be my life from now on, then i've got to look to the good things to keep me happy.
dont get me wrong, i still get angry and annoyed at this stupid fricken disease, every so often my emotions get the better of me and i find myself crying at an advert on TV for no damn reason, but i find those times are becomming less and less.
its my life, accompanied by my disease, so i'd better make the best effort i can with it, otherwise i'm going to sit on the couch and wish it away.
i've found a beautiful wife that has stuck with me every step of the way, and i know if i'd met her after i was diagnosed that she'd still be here with me.
as long as there's a toilet near by, decent TP, some nice meds of choice and
soothing butt cream i think i'm going to be ok.
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I had no serious symptoms until age 45, but I did have some symptoms all of my life on and off.
I had surgery to remove a stricture, and investigated my treatment options. I actually use several methods to keep symptom free but I am doing well now.
I do not know if I can stay symptom free forever or even until next year, but i also do not know that I cannot do that.
No guarantees, but it is possible to be well much of the time. All of us are different so there is no way to know what lies ahead, but neither does the rest of the population.
Take it day by day and have a plan on how to improve. Learn as you go and do not worry about the future. Do what you can to help yourself today and the future will take care of itself.
Dan, the older goat.
I had surgery to remove a stricture, and investigated my treatment options. I actually use several methods to keep symptom free but I am doing well now.
I do not know if I can stay symptom free forever or even until next year, but i also do not know that I cannot do that.
No guarantees, but it is possible to be well much of the time. All of us are different so there is no way to know what lies ahead, but neither does the rest of the population.
Take it day by day and have a plan on how to improve. Learn as you go and do not worry about the future. Do what you can to help yourself today and the future will take care of itself.
Dan, the older goat.
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Hi Amy, and welcome;
I have been diagnosed for 2 years now, but I can look back at my symptoms and say I most likely have had Crohn's for 6 years. Each flare seems to get a little bit harder to get under control... I seem to have them every 6 months or so. No surgeries (yet), fistulas (yet), blockages (yet), but these are all things that are possible and in the back of my mind. My usual flare-up symptoms are D (with blood), pain, extreme fatigue, loss of appetite, nausea, malabsorption/dehydration, vomiting, urgency and abdominal cramping. Before being diagnosed, I had weighed 294 lbs. When I was admitted to Emerg two years ago, I was down to 184. (I lost 110lb in 8 months without diet/exercise)... I'm back up to 200lb now, but that goes up/down all over the place now that I'm back on steroids.
There is a lot of wisdom on this board... Read and learn as much as you can, and when you go to the doctors... bring lists of questions, stay up to speed on medications and treatments, and learn to read your body's signals... Be good to you, when you're feeling well, have a plan in place so that you are sleeping properly, drinking enough water, and nourishing your body with healthy food.
I am struggling with fear of the unknown as well... But all we can do is get through one day at a time when we are not feeling well, and try not to overwhelm ourselves with worries about the future... We can only cross that bridge when we come to it.
I know it's hard to be strong: I really should follow my own advice sometimes. But, that's why we're here: to help others and maybe help ourselves in the process. Best of luck and wishes for your health.
-Sharon
I have been diagnosed for 2 years now, but I can look back at my symptoms and say I most likely have had Crohn's for 6 years. Each flare seems to get a little bit harder to get under control... I seem to have them every 6 months or so. No surgeries (yet), fistulas (yet), blockages (yet), but these are all things that are possible and in the back of my mind. My usual flare-up symptoms are D (with blood), pain, extreme fatigue, loss of appetite, nausea, malabsorption/dehydration, vomiting, urgency and abdominal cramping. Before being diagnosed, I had weighed 294 lbs. When I was admitted to Emerg two years ago, I was down to 184. (I lost 110lb in 8 months without diet/exercise)... I'm back up to 200lb now, but that goes up/down all over the place now that I'm back on steroids.
There is a lot of wisdom on this board... Read and learn as much as you can, and when you go to the doctors... bring lists of questions, stay up to speed on medications and treatments, and learn to read your body's signals... Be good to you, when you're feeling well, have a plan in place so that you are sleeping properly, drinking enough water, and nourishing your body with healthy food.
I am struggling with fear of the unknown as well... But all we can do is get through one day at a time when we are not feeling well, and try not to overwhelm ourselves with worries about the future... We can only cross that bridge when we come to it.
I know it's hard to be strong: I really should follow my own advice sometimes.
But, that's why we're here: to help others and maybe help ourselves in the process. Best of luck and wishes for your health.-Sharon
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I use to think about it a lot, but eventually realized that I didn't want to spend my life worrying about how much worse it could get. Sure I have bad days, I have had downright horrible days where I could barely get out of bed. But, I refuse to let Crohn's have the upper hand! It will not get the best of me. Many people live with far worse conditions or diseases and I know I am strong. I just have to learn how to manage it better. I just tell myself, and anyone who asks, I am not sure how long I will feel this good...but I am going to enjoy it while it lasts. (I just recently have gone into remission after nearly a year of major issues...I had even been pulled out of work by my doctor.)
Take care of yourself. I have had to learn that my health comes first and to not be ashamed if I have to take it easy or ask for help at work or around the house.
Take care of yourself. I have had to learn that my health comes first and to not be ashamed if I have to take it easy or ask for help at work or around the house.
Thanks everyone your replies have made me feel a little better. I suppose once I have my head around it I will cope so much better, I suppose I am still at the 'I don't understand' stage. I feel angry, upset, guilty, sad etc etc pretty much every day at the mo but I know I will get there.
Thanks again x
Thanks again x
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jed said:i'm pretty much resigned to the fact that i'll need to be bagged one day as well, and possibly other surgeries. ah well. if thats going to be my life from now on, then i've got to look to the good things to keep me happy.
dont get me wrong, i still get angry and annoyed at this stupid fricken disease, every so often my emotions get the better of me and i find myself crying at an advert on TV for no damn reason, but i find those times are becomming less and less.
its my life, accompanied by my disease, so i'd better make the best effort i can with it, otherwise i'm going to sit on the couch and wish it away.
i've found a beautiful wife that has stuck with me every step of the way, and i know if i'd met her after i was diagnosed that she'd still be here with me.
as long as there's a toilet near by, decent TP, some nice meds of choice and
soothing butt cream i think i'm going to be ok.
That is how I always looked at it. I always knew I'd have surgery, it was only a matter of time.
My friend reminded me of a conversation I had with him 15 years ago. I told him I'd need surgery before I was 35. I got my surgery just last december, a month before my 36th birthday.
The nurses and doctors didn't believe how positive I was about getting Bagged (as Jed put it, I like that phrase), but it was simply that I'd had 20 years to get used to the idea.
It's a scary journey we're on, but it helps to look at it in a positive light. For example, surgery isnt a frightening thought, just something that will make your life better. And the same with meds.
